TRIPLE POSITIVE GROUP
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rozem - yay! So happy for you!
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Rozem Congratulations on a clear scan! Yay! Tears of joy are the best!
I've been quietly observing and soaking up all the conversation. You are all so knowledgable, positive, inspirational and have great senses of humor! It's weird.... I feel like a stalker. I'm NOT!! I just passed my one year mark from diagnosis and am clear. I have my last infusion of Herceptin in 2 weeks. In the meantime I'm on a 3 week break from th much HATED AIs. I've completed chemo first ( 6 cycles TCH), lumpectomy, radiation for 28 days then tried Arimidex, Letrazole, then Femara. Each was a little better than the other but all left me achey, tired and not a person that could have a great quality of life for 5 years continuing as I felt.
Even though I had a total hysterectomy in 2007 and am 51, MO wants me to try tamoxifen next for the 5 year plan. Since I already have osteopenia and hated the sore bones feeling and tired joints and "walk like an 80 year old" stuff, I am eager to have a go and see if I can handle it. Knowing that it only adds a 3% overall benefit, I'm ready to jump ship quickly if it isn't tolerable. Any experience or suggestions are great.....thanks!
One more question: Does anyone support having a scan (PET) to verify NED after a one year treatment plan similar to the one I under went?
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rozem--- Great news!!0 -
geewhiz...congrats on your up coming 5 yrs!!!!
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rozem....i love good news, so happy on your clear scan
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I stopped by oncology doctors today just to bring in donuts for the patients and staff and to say hello to the nurses. I am so glad I'm done But I do miss the nurses they where so kind and caring. Then I treated my self by going to the casino!!! Well didn't win but I had fun.0 -
Oh I missed it congrats geewhiz on 5 years!!! Happy Dance..
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Wonderful news on 5 years Geewhiz!
Yippee Rozem!
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Hi livin- in- sunshine
I have never had a Pet scan at all! My MO is slow to scan unless absolutely necessary. I think the medical community as a whole is becoming more reluctant unless there are symptoms.
Will you scan every year?
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thanks everyone! you know that song "happy"? I was singing it all day!
Geewiz - congrats on the 5yrs! love to read about these milestones
not that im close but I am learning a lot about hormone therapy after 5 years - the old way was to do 2.5 tamox and 2.5 AI so now its 5 and 5? 3% advantage, not sure what I will do - AI's mess with your bones so not sure which is the less of 2 evils
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if my MO and a lot of what I am reading lately is any indicator of the future.... breast cancer medical community is reassessing a lot of the standard of care. Things will likely change a lot in a few years.
Quality of life is something I read more about all the time. Is this treatment benefit worth the cost in quality of life ? Think it was always the case but speeding up lately . Even the whole mammogram debate is being questioned. Is it worth all those scans and the fear and anxiety if there is no appreciable increase in survival?
Lots of debate all around.
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What a relief, Rozem! And what a perfect song to accompany your joy!
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geewhiz, congratulations on five years!!
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Yay! LeeA is back! I missed you! We both joined this board around the same time, and boy do I understand the head in the sand thing.
Interesting about the LDH. The electrophoresis to separate the different isozymes is an ancient, ancient lab test, and I noticed my MO ran it on me at my 3 month appointment. I can see my lab results online. I was so wondering why he ran it...it was normal...but now I wonder if it is the AI's. They never ran it while I was being treated. But seriously, it is not a common test to run.
I would say do your very best to avoid tylenol products at all costs. They are nasty on the liver. In my old job we saw a lot of young kids in autopsy who took maybe 8 at the most as a cry for help. Their livers looked like lace. I won't take the stuff at all.
As to iron overload or hemochromatosis, I carry one gene for it because my father had it. In essence, I think it contributed to his cancer (liver). I was tested for ferritin by my MO because I requested it during one of my herceptins and it was screaming high (well over 200). So I requested the genetic test for hemochromastosis to see if I carried two genes, one from my father and one from my mother. I don't...just have one abnormal gene from my father. But my NP said that iron metabolism gets a little whacky for awhile after chemo. I'm one year and 3 months out from final chemo and still have a low hemoglobin and hematocrit. While I don't have a macrocytic anemia, I am very deficient in folate so I take a ton each day to help make those happy red cells and clear out all of this iron. It's like it isn't getting put in the right place...hanging in the iron bank and not being spent.
So I'd say keep plugging along, don't use fertilizers (MiracleGrow is ok, but nothing bizarre or fancy), stay away from tylenol, and keep an eye on it. As long as you are not 2 times above the upper limit of normal, most doctors feel it is transient, but I do have to look up livers and the AIs.
YAY Rozem! I love happy news!
And Living--Most MOs and ROs want to avoid too much scanning because of too many false positives. PET and MRI find everything, even when it is nothing and then the docs have to chase it and freak you out, waste money and resources.
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Great news Rozem!!
congrats Geewhiz
and welcome Livin-in-sunshine
2nd treatment today and uneventful. However my liver bloodwork was all high AST 41 - high range is 31, ALT 79 high range is 31 and ALK Phos 166 - high range is 144. MO is gonna run a hepatitis test next week with my CBC and monitor them - all were normal prior to chemo so he thinks it is the chemo. Did anyone else have high liver enzymes while on chemo? I do not use anything with tylenol - it makes my stomach upset. In fact I have only taken one pain med since two days after mastectomy.
Also he will not be doing any tumor marker tests on me while on chemo and maybe not after as he says they will not be accurate for me as the test that he did when I still had two active tumors and no treatment indicated that I did not have any active cancer. He said he will only test or do any other test if I present with symptoms. That scares me.
He reduced my carboplatin by 15% as he thinks that is what is causing the neuropathy... I really though taxotere was the big culprit in neuropathy? Also - no one at the center understands why I am icing hands and feet and mouth... not the doc, not the PA and not the nurses. They think there is no value - but I am still doing it. Asked if I could use Latisse during chemo to try to keep my eyelashes and they recommended not to use it in case my tear ducts have issues from the taxotere which i understand but - it is a shame cause my PS was will to give me enough to last 4 months so I could test it out so he could recommend it to others if it worked for me. I got a 125 fill yesterday and no pain or discomfort - he is hoping that we can do the exchange by the end of october.
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Linda--- No one at my clinic did any of the icing hands, feet mouth or head to save hair. I learned all that on here for me to late to do anything about but at least I know now. I was very mad at first but am over it now.0 -
By the way good to here from you LeeA0 -
Hi Pbrain, it's good to see you as well. BTW, re: that co-worker (I read all about it as I was catching up) - I cannot imagine what's going on in that person's head but you are very wise to steer clear of that kind of negativity. I'm just sorry you had to even be exposed to it at all, especially during such a stressful time in your life. You are such positive person that I'm reminded of the old saying "I'm a duck, quack quack, I'll let it roll off my back" (a friend told me that years ago and I've never forgotten it). It would be nice if there was some kind of scientific explanation for the rear-endedness of some folks but I just don't think there is. Yet...
I have the results of more blood tests today. Aldolase (normal), CRP - elevated, SED-Rate - elevated, RA factor 10 (less than 14 seems to be "normal." CPK still isn't back. Some other tests regarding hepatitis types - all negative. I just had a drain removed yesterday and I'm three weeks post-surgery so who knows.
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Hi Ang, I hope all is well with you. I think one of my old childhood friends might live in your area. I was going through some old stuff and saw a return address and thought "hey, that sounds familiar!"
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linda 505, carboplatin is a platinum drug, and also causes neuropathy. my friend had only platinum chemos for lung cancer, and had horrible horrible neuropathy for the rest of her life. and i heard someone say if you do latisse during chemo, you are going to lose some very expensive eyelashes.
pbrain, i think you have an appointment tomorrow? unless i am losing my mind, and than could be... but if you do, i am wishing you very well indeed. i think it was something about nodes? fingers crossed!
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Linda 505
I 've recently started using Latisse and it is great but there are issues with it. Nothing that would stop me but many get irritation, discoloration and itchiness on the lids. Chemo and for me even herceptin made eyes tear a lot. Think it first of all would have washed away the solution and secondly made for some discomfort .
I didn't lose my lashes till chemo was over . Suggest it may be good to wait until after chemo at least to start .
It's a great product waiting for you soon. Wish I'd started using it much sooner.
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Pbrain, I went back to my screen shots from January 2014 and found this:
Development of a novel aromatase inhibitor, anastrozole (Arimidex)--its basic and clinical studies
Excerpt:
The most common adverse drug reactions were leucopenia in the 0.5 mg group, and LDH increased and leucopenia in the 1 mg group.
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My oncologist prescribed generic Latisse (at my request) but I wasn't diligent (at all!) about using it. FWIW, I don't think the generic form of it is as potent as the actual Latisse product.
I recall my most noticeable eyebrow/eyelash loss happening after chemo had ended but while I was still on Herceptin.
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Your eyelashes fall out after chemo because the new ones push them out. They were already fried by chemo but you (and I) were lucky we got to hold on to them.
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linda - with TCH chemo Carboplatin is kidney filtered and Taxotere liver filtered. It is not surprising that your liver values are wacky. They are monitoring to make sure that you don't go into failure, but they expect some degree of effect. I would wait on the Latisse until you are done with chemo and then use it. It will encourage new growth but I don't think it will stop the loss.
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Thanks all - My Mo wasn't overly concerned with my numbers but he did say he would be testing them every week for awhile. Of course, because I am who I am, everything concerns me LOL.
yeah not gonna do the latisse til after now - I just really wanted to be my own little test person for my PS LOL - especially when he was going to give me the stuff for free LOL.
My WBC and ANC never did drop the whole 21 days - in fact today they were both very high - I asked about my need for neulasta tomorrow and the nurses said I should get it as it appears that it works well for me but delivers it slower as she thinks I peaked today and that today's chemo will beat them down by the end of the week.
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Here's an update on my knuckle.
We caught it before it got bad - it was red and swollen by bedtime Sunday night. I took one of the Duricef I had leftover from my exchange surgery, and was able to get in to see my PCP on Monday.
He confirmed the infection (probably staph) and told me to take the Duricef for a week. He also gave me a script for an antibiotic cream that I'm supposed to use for all future cuts / scrapes.
It's still a little sore, but it looks much better today!
My plastic surgeon said for me to pick some hobby other than gardening, and I think my hubby wants to put me in a bubble. 0 -
Oh gosh...
A hobby other than gardening??
I admit, I'm not as careful as I should be - but when I am being careful I wear non-latex examining gloves underneath gardening gloves. I also keep tea tree oil around and hydrogen peroxide. I've had terrible hangnails since chemo/herceptin and I admit to doing some home surgery on them (probably pretty stupid but they were driving me nuts).
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Did you notice the breaking news banner on BC.org about MRIs? MRIs done prior to surgery don't seem to make a difference in recurrence rates!
I wonder what ,if any,other scans were done on the women. Maybe the mammo & an ultrasound?
Questioning mammos & now MRIs. Pet scans already less used.???
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I did read that but think about it - how can a diagnostic test of what is happening now have any effect on future happenings. If it isn't there now - it can't be seen. Thankfully I had one that discovered the tumor in my other breast that the mammos had missed for years. My breasts were dense so that is why my BS ordered it - and I am ever so thankful for that as I would have just had a lumpectomy and be oblivious to the IDC in my right breast. Maybe the chemo would have taken care of it but maybe not. I really think we will see alot of diagnostic testing deemed useless as time goes on and I think most of that research will be driven by the insurance companies that are all up in arms about obamacare and it requirement of payment on preventative mediciene. Aetna's CEO - my insurance - has gone on record as strongly opposed to obamacare and so opposed that they were sure it would get struck down before it went into effect. My company is small so this year when we went to renew they only offered up their open market obamacare plans - which were fine as they were close to what we had before with some improvements and some increases but basically the same price. HOWEVER, we purchased this plan off the summary sheets - that was all that was provided. We have not gotten the complete written plan in the mail yet and I called AETNA -as president of the company - and requested our copy and was told it wasn't done being written!!! WHAT??? They said as soon as it is printed we will get it - I asked when that would be and they said they did not have an estimated completition date?? WHAT??? We purchased this plan March 1st.
That explains why my MO's office is being told one thing about my responsibility and my online status of payments and responsibilites are different than what I see and what I am being told. It is driving me and the MO's office crazy. Right now - according to my calculations - based on my online claims processing - they have collected 140 more than they should - that is a combination of collecting more on some and less on other things and there is no consistency - one set of labs - the smallest cost ones - the insurance company says I must pay 25 for - they told mo's office to collect 15, the big lab they told them to collect 60 from me - my insurance says I owe 0 LOL. They told the mo's office to collect my specialist copay of 60 for the neulasta shot - online it says zero - and that is just a few of the discrepancies. CRAZY. If I do not get a written policy by mid june I am contacting the insurance commissioner in florida for assistanc.
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